Hi ANdy,

I read with interest how you are doing on Pom/Dex, I am finding it exactly the same, the Dex is hard to swallow, 20tablets each Friday is so much harder for me to do than 10 each day for two days I was on before with velcade-which didn’t work at all for me.I always sweat badly when eating my main meal on the Friday, be it lunch time or…[Read more]

Hi Ali and you all,
I had a scare whilst still under Kings after my transplant so was not discharged from them till well after my 100 days, then my local hospital took me back and never mentioned any maintenance. So I continued four weekly bloods and assessments and Zometa till one day one of the trials nurses saw me in the waiting room and said…[Read more]

Hi Sarah and Henry,
I was going to make same suggestion as Tom, both our local hospital chemotherapy team and hospice have counsellors, if you have not been to a hospice before you need to be referred by your GP and then assessed by the hospice.
I do not have a support group close to me but my hospice runs a drop in morning where I get to meet…[Read more]

Hi Billy,
Good news with the remission, it is what all the family want to hear and
good luck with the SCT, it is hard as you will be feeling the best you have for a long time, but as every one has said it is worth it.

Hi Peter,
this is interesting re your cough, I too have had a cough since just before my SCT, possibly from the first…[Read more]

Hi David,
I wish you a lovely tour and hope the weather is kind to you.
Love Babs. xx

Hi Jean,
Happy Birthday to Frank,
Love from Babs. xx

Hi Ann,
On diagnosis I had daily visits from the district nurses to do my clexane injections, they arranged for the local occupational therapists to come out to see me and they arranged for me to have on loan, toilet raisers, the bed guard, perching stools for the bathroom and kitchen, trolly on wheels,and a man came to put hand rails up the…[Read more]

Hi Ann,
It might be that you have been diagnosed at early stage and this is why chemo not yet started, can you not ring the team and ask? , we all remember questions we wish we had asked after leaving the consultants appointment, after all there is a lot to take in.
I must admit that I was so ill at diagnosis that I had no idea what I was…[Read more]

Hi Helen,
I've not been on here for few days due to getting over my chest infection and since Tuesday a frozen shoulder,seems so insignificant in comparison to your relapse, so sorry to read of this.
Lots of cyber hugs to you from me.
Love Babs

Hi Mavis,
Like Helen I too have got insurance through world first, a years cover also which is brilliant, you do need to ring them but they know all about myeloma which others dont seem to!
Good luck
Love Babs

Hi Ann,
Like all before welcome to our club to which we all wish we never had to join, I was diagnosed by my GP which a consultant at Kings told me was very unusual as most GP's only have one myeloma patient in their lifetime as GP's,but luckily for me mine was brilliant, I started with back pain in November 2010 which I knew was not "NORMAL…[Read more]

Hi Phil,
I used to come out in very dry blotches on my face which were very red and sore from the outset of starting on Revlimid and Vorinastat, then I had bad lung pains which were so bad I was admitted into hosp through A&E but all checked out with my health so we put it down to the pills, as it was only six weeks after my starting on the trial…[Read more]

HiTom,
You and me both, I too have a dreaded chest infection-n who gave me mine I too want to know!
We saw consultant on Friday morning and I said I had had awful cough for months now which was deffinately getting much worse, he sent me off for chest x ray, we then travelled on our way to the hotel for our weekend break away.
Cough just got…[Read more]

Hi Debs,
I had my SCT 22nd March 2012,am too taking 10 mg of Revlimid and asprin only,said to be in "full partial remission", I too often have flushed cheeks, mainly noticed after I have eaten,but can be at other times too, but that could be more noticable due to the people sitting at the table with me.
Like you the SCT took me through the…[Read more]

Hi Nikki,
In answer to your question re how your dad is now feeling during his SCT, this is quite normal for all of us who have undergone this procedure. The hospital team will monitor his temperature for early signs of infection and will act upon any immeadiately, the chemo given prior to cells being put back in is so strong it wipes the patient…[Read more]

Hi Eve,
I had Reiki for many years before I was where I am now, I also had 6 sessions of it at K&c after diagnosis where it is paid for by the cancer care club. I don't know if you are aware but they do Reiki and so very much more at the hospices for both cancer sufferers and carers, I always thought hospices were only for end of life care but…[Read more]

Hi Eve,
Ah, I know many of you on here have much more experienced of myeloma than me, I was just trying to be positive for you and slim but now understand regarding the 2nd SCT.
I am pleased that just sharing this has helped, the support found here is just brilliant.
My thoughts are with both Slim and you,
Love Babs

Hi Eve and Slim,
This is the first time I have used private messaging on here, wasn't sure how it works as am quite computer phobic, it is quite easy though. Just went in to my own profile and saw the one I sent to you, having now looked there is a box which will show me when you reply to me, will be interesting to see if I am somehow sent…[Read more]

Hi Jean,
It is early days after the SCT , I remember after mine I had no energy at all and even to walk around the room in the hospital was an effort. The physio's came daily and told me what exercises to do but to be honest I tried but it was just so exhausting!!!!! I remember the first time they walked me to the end of the corridor, I had to…[Read more]

Hi Eve,
yes bloods and assesments and Zometa every 4 weeks and consultant every 3 months, I have private messaged you on here the details, we may well meet up at some time.
I have already met up with some very old work collegues who we meet regularily as they have to go into canterbury every weekday for injections! He has lukhemia .
We had…[Read more]